Category: Living Life to the Fullest

Story Time-Our Wedding Day

On By tomstroopsIn Alpha Lima Sierra, Living Life to the Fullest2 Comments

The Big He and I get to celebrate our anniversary for two days. I know, you are asking yourself, how is that possible. Well, 31 years ago, we eloped on the island of Guam, which is a day ahead of the US. Guam was the Big He’s first Duty Station. We had planned for me to visit for the summer of 1990 and would marry later in the year. Well, as with any good love story between two very young kids, fate had us marry earlier than we thought.

A few days after my last college final in May 1990, I was on a plane to visit the Big He on the island of Guam. I had a return ticket for the first part of August. I would have two whole months, sixty consecutive days to be with him. By this point in our relationship we may have had a total of 45 days we were physically together and keep in mind they were not consecutive.  Let me just say, I had the best time with him on the island. I was, for the first time in my life, off on my own-okay I was with the Big He but it still counts. I was on a tropical island with the most gorgeous man AND he was in a uniform. Who knew I had a thing for smart-ass and uniforms. In mid-July, the Big He was preparing to go off island for an exercise. He would be gone for 30 days. We had only two choices for what I could do. I could go home early or stay. So, we got married July 30th, 1990 which was about one year after we went on our first date. I was twenty years old and he was twenty-one. I had no job and only 2 years of college under my belt. He was just an Airman First Class and on the day we married, he had negative $80 in the bank. He had bounced a check for a microwave of all things. Of course a bounced check could not stop love!

You would think finding out you were negative $80.00 would be the worst thing that could happen on your wedding day…it wasn’t. You ready? Here is the story…

We had arranged for two friends of the Big He to come with us to be witnesses and also because one of them had a vehicle to get us to the Justice of the Peace (JP). There was actually five people in the vehicle that went that day. At the JP’s office, we did have to wait a litte bit. In those minutes before our time to get hitched, my stomach was a ball of nerves. The Big He and I could barely look at each other. I knew I wanted to get married, but man was I scared. Standing in front of the JP and looking into the beautiful green eye’s of my future husband, the best I could mumble when asked if “I take him to be my…” was not “I do” but “Yea”. WTH??? Such a romantic and traditional way to express my desire to cheris this man for richer or poorer or in sickness and in health. The look on his face…he has yet to let me live that down.

After the ceremony, which there are zero pictures, we headed to McDonalds because everyone was hungry. Remember I said the Big He had bounced a check…yep no money to eat. After McDonalds we headed back to Base. On our way back, we were pulled over because the driver was speeding. After getting a ticket, we took off once again towards Base. About a mile down the road, we had blowout. Not a big deal until we realized there wasn’t a spare. The blowout occured on a back road to Base and in the middle of no-where. There was however a small house on the edge of the boonies or jungle line. I was voluntold to go knock on the door and ask to call the Law Enforcement Desk. Oh, hey, did I mention that all the people in the truck were cops but I was the one that was supposed to knock on a stranger’s door for help. One of our brave USAF LE’s did come with me and the LE Desk would be sending a patrol car to come get us and sending a tow truck as well.

As we waited in typical tropical island weather, we had on again, off again rain events. Y’all know I have naturally curly hair right? It does not do well in hot, rainy, humid weather. The tow truck was the first to arrive. My new husband and our friend Daryl, my man-of-honor, jumped in the truck and off they went to Base. Yes, if you are asking yourself, did she say new husband left with Daryl, that would be correct. I was left alone on the side of the road with two people, none of which were not my new husband! The two LE’s decided it was probably a good idea to start walking back to Base in hopes the patrol car would get to us soon. Yep, that didn’t work out very good. The patrol went out the wrong gate which took him around the island before he caught up with us…only a few miles from Base at this point.

Once back on Base, we were dropped off at the dorms, where my new husband was waiting for me, freshly showered and I swear he took a nap cause he look rested. Me on the other hand, had wild crazy curly hair, sweaty and my pretty white heals were worn flat from walking on the road which had a coral base to it. Once I freshened up, we went to have a wedding dinner at the NCO club…cause we had no money and he knew if he took me to the Mac T I would kill him. The only thing left that late in the evening was steak, potatoe and salad. They also had a few slices of cheesecake for dessert so that was our meal. One we have eaten every year since. Steak, potatoe, salad and cheesecake for dessert.

The day wasn’t picture perfect but that is not really what a marriage is about is it? It’s about the people. We actually laughed most of the day and night about what had transpired. The Big he and I have always found reason’s to laugh. We just love being with each other and truly enjoy each other’s company.

Since it is already July 30th in Guam, I am taking the opportunity to wish my beloved a Happy Anniversary. Love you more!

All my love,

The She

Walking and Rolling

On By tomstroopsIn Alpha Lima Sierra, Day-to-Day, Living Life to the FullestLeave a comment

Hey there. This is Lou as in Lou the service dog. I was made Team Captain of this years ALS Walk in Austin, TX. Why would The She put me as Team Captain of Tom’s Troops, well it just so happens I raised a lot of bones (that’s money for you hoomans) last year.

I want to reach out to all the pets out there (dogs, cats, birds, lizards, fish, you know who you are) and ask for a $20 donation from you. If you feel the love and want to donate more, that would be great! If your hoomans want to donate even better. I would also love it if  you would register to be a walker. Just know that I lead the way (I am the designated line leader). You can register as a walker or donate here. You can also register as a walker and not even walk, you would be a virtual walker.

So why do I walk, well first its what dogs do. Second and actually way more importantly, I am doing it for my person and very best friend, The He. I love him and want him to be my family for a very long time. So walking let’s me do my part to help bring awareness to this horrible, terminal disease. One that I might add has no cure or management to prolong life beyond a few months.

If you want to keep up with me, I have my own Instagram page. Yep, I am getting kinda famous. I mean, I do have the looks and the talent. Check me out on Instagram @lou_the_mobility_dog

See you soon,

Lou Gehrig Garey (The service dog)

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ABC’s of Fall 2017

On By tomstroopsIn Alpha Lima Sierra, Living Life to the Fullest1 Comment

Yeah, Yeah, Yeah I know it’s been awhile. September – November have seemed to fly by. I mean we are only a few days till December. Seriously?  I don’t like it one bit. I want to hold on to every minute but they just slip out of my hands as fast as I catch them. Our time lately has been filled with Advocacy, Being Grateful, and Cruising for a little get-a-away.

Advocacy

Being handed a crappy situation can either make you go inward to deal with things in your own way and on your own time or makes you so damn mad you push things outward, kicking and screaming for someone to hear you. Guess which way we went…

Advocacy means so many things. For us, we are constantly advocating for the Big He and other disabled veterans with ALS with regard to the VA for services and equipment. Recently we were denied a program that would place someone in our home to help the Big He with making lunch and being there when he eats due to choking concerns. With one program, the VA did not even submit a referral for a particular homemaker/caregiver program. Keep in mind, I am lumping these scenarios as “The VA” but in truth, it is the individuals we are working with. For the most part, once you get to a decision-making level, individuals seem to make better decisions regarding how to handle situations. One of the most frustrating part with working with some at the VA is the inability to identify solutions be it other programs or even suggesting taking it to management to get their input.  I have heard some refer to this as the difference between old VA and new VA. It’s a culture of status quo or a “that’s not my job” attitude. At a time when the VA is getting hammered for so many things, you would think that management would be encouraging solution oriented approaches. I have also observed that the old VA approach to things is intimidation with requests. Questioning some at the VA regarding how decisions are made are not met kindly. Lucky for us, the Big He and I have both been government employee’s and that way of thinking does not phase us. We clearly understand the hierarchy in government offices and how to get resolution to our problems. We also understand that most of the time you need to take a bottom up approach but there are those times that dictate a top down approach. Needless to say getting denied did not go over very well with me especially when the VA uses portions of their policy to deny us but leave out the portions that would apply. I am happy to report that after a meeting with decision making individuals at our VA, there was a solution to our problem and the Big He will be getting someone to help him with lunch time routine to begin with.

Advocacy for us has also has been raising awareness for Alpha Lima Sierra. We do this constantly. There are many people that are unaware of what ALS really is or that there is a veteran connection.  In early November, we took part in our 2nd ALS Association Walk. We had a great time and had about 20 walkers with us. Even our new family addition, Lou, got in on the advocacy by raising money for the cause. He did great and raised over $1000.00

Being Grateful

I will be honest, at times it’s hard to see things through the eyes of gratitude. We are so consumed with this ALS life that taking a step back is hard. I try every night to be thankful for my many blessings. This includes trying to find something to be thankful for in an ALS world. I am grateful that we are meeting so many amazing people in this journey. I am grateful that the Big He can still talk and say “I love you” as well as he can still walk (short distances). I am very grateful we have someone in our life now that is helping us. She will be the Big He’s caregiver while I am at work.

Cruising

We did a Thanksgiving Cruise with the Big He’s Dad, Stepmom, Sisters, the one Brother-in-law and their kids. We have done several cruises but this one the Big He was more limited to what he could do. It was hard for me to see this and I can only imagine what it was like for him. We had a great time but it did open our eyes to limitations that disabled people deal with daily. Traveling takes a lot more thought then it once did. We figured things out and had people to help along the way. There were new friends that would help secure an empty elevator for us, or move people out of the way so Frank the Tank could get through. Yes, we took the tank wheelchair and it was a hit. That alone helped us do some advocating for The Independence Fund and Carlson Mobility and how they help disabled veterans of all era’s. There was also the chance to bring up ALS and its impact. If we educated one person or made them more aware, that makes me happy, that is another thing to be grateful for; being able to communicate to others what ALS is and what it does to people and their loved ones.

I think that pretty much covers what we have been up to lately.

All my love,

The She

The Big He’s update: He is about to start his 4th cycle of Edarvone which was shown to slow the progression by 30%. Can we see a difference? Not really. ALS does not progress in a linear way. It can be fast, slow or even pause for a bit, but it’s always moving forward, always progressing. The Big He’s speech is really starting to be impacted. While he can still talk, he does get tired and you can detect some slurring. He is still eating like a champ and not needing his feeding tube/button. Walking poops him out so it’s a common thing now for him to be in his chair when we are out and about. Please continue to keep him in your prayers and that this disease halts long enough for us to see a cure in the Big He’s lifetime.

Whisky Tango Foxtrot!

On By tomstroopsIn Alpha Lima Sierra, Day-to-Day, Living Life to the Fullest5 Comments

Yep, that’s right, WTF! That was really our first thoughts and I think I may have actually said it, when carpel tunnel syndrome turned out to be Alpha Lima Sierra. We are walking around in this fog of disbelief, grief, and anger. Oh, throw in confusion too. We have been trying to wrap our minds around what Alpha Lima Sierra means to our family, our marriage, our life. We know what the disease is, what it will do but what does it mean for us.

It means our world has once again been knocked off its axis. When we experienced the loss of our twin daughters in 2000 and the loss of first son in 2001 our world tilted. It is now even more catawampus. We know the grief path and know how hard it is.  We will have to learn to live in this new world of ours. Which right now is kinda hard. I know we will figure this out. Our goal is to LIVE and ENJOY the time we have as a family.

It means in our new world we will find love and laughter in the small things (and most likely the inappropriate things) and will find them daily. That’s just how we have always rolled. I have noticed the minutes we are together are more precious and the time apart is so hard. Let’s face it, Alpha Lima Sierra is the kind of disease that you know when the moment has gone it has gone. No do overs. So why waste a moment. Our family has always been the most important thing, but now we show this by our actions and not just our words. We don’t let the day to day crap take us from what is important. We see this in our little he as well. He has always been a caring kid, but now he takes time to send us sweet text messages like “I love you” instead of the “Can I get on Xbox now?”.

It means in our new world our walk with God has strengthened in ways we could not have imagined before. For our whole family. Knowing God is us watching over us, Jesus is walking beside us and the Holy Spirit is within us keeping the darkness away gives our family the peace we need to face this. We know we are not alone in this because He is with us. Now, let me just put it out there, we are scared and we do ask why and how can this be. But it is in the same breath we ask for His comfort and peace.

It means in our new world we are focused on doing all those things we have dreamed of doing and making all the memories we can NOW. We are not just thinking of bucket list items we fully plan on crossing them off. Trey is adding to the list as well. There is no more “when we retire” or “when our son is in college”. We are doing now.

So what does all  this mean to us. It means we are going to LIVE and ENJOY life NOW.